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Just wanted to share my experience and ask people what they think. I was diagnosed way back in 1993 at age 25. Been on meds pretty much without a vacation ever since. I am 41 now.

Been on protease inhibitors since 1995.

With a new regime (Prezista, Isentress, Norvir. and Intelence) I finally achieved zero viral load last year and my T cells are climbing slowly. They were 20 when I was first diagnosed, so seeing them grow has been sort of shocking!! Never had any major health issues except PCP once about 15 years ago when I went off meds and was run down and didn't take care of myself.

By FAR my biggest issue is the Lipodystrophy. About 3 years ago I started losing weight and finally my cheeks started to sink inward. My butt disappeared and I saw the beginnings of the belly.

I did 4 sets of injections of Sculptra last summer and am pleased with the results....Wish I had done it sooner, the effects are still lasting nicely.

My big problem is the BELLY. I HATE it and it is making my life miserable. I have a 32-33 size waist, but the belly is so much bigger that if I tuck shirts in...it is really noticeable. I also noticed that larger pant sizes help because then the difference between my belly and waist isn't so noticeable.

I went from tshirts that were medium to XXL in a few years, with no fat really accumulating anywhere else. My self esteem is severly damaged by this, and I find myself trying to hide my stomach whenever possible. I am single and don't even think about dating.

I want to wear a corset under my clothes.

A few years back a guy at a bar started coming on to me aggressively and said "You're cute even with your GRANDPA BELLY". I wanted to punch him or die, and sometimes I feel disgusted with the body fascism in the gay male community.

My doc put me on metformin 500mg once a day. I have been on it about two months and I am seeing VERY small changes (if at all). Is metformin even worth it???

Should I be on a severe sugar restrictive diet? I exercise, but should I be dieting like anyone who has extra weight? There is so little information out there on this.

Is anyone aware of supplements that might provide even anecdotal help? Should I drink a ton of water? I just want to try something else, and I know that liposuction is not an option.

I started swimming laps because I wanted cardio that works the upper body. Any info or advice is appreciated!!

Your results would probably be more obvious if you were able to discontinue the offending agent.

poz4afewyears -- that was kind of cold, and not very helpful. Unlike you, idesnycguy has had years of prior HIV meds. That fact, along with his age and extremely low starting CD4 count, make his story a classic case study in lipodystrophy.

idesnycguy -- your story is heartbreaking. You are right that there are not a lot of options for dealing with lipo-related "buddha" bellies. Have you discussed Serostim (human growth hormone) with your doc? Here's our drug summary page on this:

I don't know what you mean. I was saying that if he were able to discontinue the offending agent he might see more of a result. Remember how some clinical trials of Actos and Avandia showed no benefit for increasing subcutaneous fat. But they found that when they offending agents were discontinued that the results were more pronounced. I don't know if he is able to discontinue or not. I am not his doctor, nor have I read every single post he has posted. I was simply stating an opinion based on how clinical trials of other drugs for lipodystrophy/lipoatrophy have resulted.

It's very doubtful that a patient that took 16 years to have their viral load suppressed, and that is on 3 HIV medications that have been FDA approved for 2 years or less (meaning they'd cycled through most everything else available due to resistance issues) has "non-offending" options.

Let's try and have a little context here, shall we? It's nice to throw out opinions and all, but if you don't have the context to do so then why bother in the first place?

I'm sorry you're having to go through this, especially on the heels of an otherwise great response to your most recent regimen.

While there's been one suggestion here that your current crop of drugs may be to blame, I think it's important to take this with a big grain of salt.

For starters, as Philicia suggests, you're on a number of new agents and it's virtually unknown if any of them are associated with an increased risk of fat gains. It may take some time, via ongoing research, to ferret out data suggesting that any of your meds are particularly problematic (even the low boosting dose of Norvir, a drug that has been linked to lipo in the past).

Second, it may not be the actions of specific drugs at all. One thing we've seen, consistently, in past research is that increased abdominal girth (caused by a buildup of what is known as visceral fat) seems to occur most frequently in people who have been infected with HIV for many years, have been on a long string of HIV treatments, and are finally achieving an undetectable viral load and boost in CD4 cells. In other words, body-shape changes such as visceral fat increases may be a negative effect of the health benefits afforded by antiretroviral therapy (one possibility -- with HIV being kept in check with meds, the body's metabolism goes haywire and starts storing an abundance of fat).

As Peter suggests, there are some nifty products in development for the treatment of visceral fat accumulation.

Serostim -- recombinant human growth hormone -- was the first to show promise, but it's been dogged by safety concerns, data that doesn't seem to answer long-term efficacy questions (we know that once the drug is stopped, fat returns almost immediately), and serious skepticism by the U.S. Food and Drug Administration (FDA). Plus, I've heard very few (if any) success stories involving people trying to get either their private insurance or Medicaid/Medicare/ADAP to cover this VERY pricey drug for an indication that hasn't been green-lighted by the FDA.

Tesamorelin -- developed by a Montreal-based biotech firm and to be sold by Serono, the manufacturer of Serostim -- most likely will be approved, probably by the end of the year. Right now, a few advocates -- myself included -- are desperately trying to get Serono to open an "early access" program to make the drug available to those who need it. But at this stage of the game, I don't know if we'll succeed in making it available much earlier than the anticipated approval date.

The encouraging results using a recombinant form of leptin, highlighted in the article Peter links to, come as a pleasant surprise. The researchers reported a 32 percent decrease in belly fat accumulation -- which more than doubles the 12-week belly fat reduction seen using tesamorelin in Theratech-sponsored studies. Thing is, there's still a lot to learn about lepin as a treatment. For starters, the study conducted in HIV-positive people was very small and barely begins to answer dosing, efficacy and safety questions. And safety questions abound -- leptin treatment may cause neurological problems and high levels of natural leptin have been associated with a variety of cancers. Right now, the only way to access leptin -- until additional HIV-specific studies are announced (these are reportedly being planned) -- is via an expanded (emergency) access program set up by Amylin Pharmaceuticals, but its only for those with severe non-HIV-related lipodystrophy associated with diabetes or elevated triglycerides.

As for the metformin, there's VERY little data to suggest that it has an effect on belly fat. While it's definitely a worthwhile treatment option for folks with diabetes, it's role in lipodystrophy is anything but clear. I'm not saying it's not worth it -- I'm just saying that the use of metformin specifically for this purpose is a shot in the dark.

While it's definitely premature to recommend a change to your HIV treatment regimen, and not yet possible to speak of approved lipodystrophy treatment options, I do think that it might be a good idea to sit down with a nutritionist who knows his or her HIV stuff to talk about dietary changes and exercise recommendations that might help. There have been some reports, most anecdotal, that cardiovascular exercise and cutting down on sugars and carbohydrates can help -- a nutritionist can help you map out a dietary plan of attack. Ask your doc for a referral.

My big problem is the BELLY. I HATE it and it is making my life miserable. I have a 32-33 size waist, but the belly is so much bigger that if I tuck shirts in...it is really noticeable. I also noticed that larger pant sizes help because then the difference between my belly and waist isn't so noticeable.

Hi,

Don't really have any advice to offer you, but I know exactly how you feel. I've never been on any protease inhibitors. Only Viramune, Epzicom, and Viread, since about October of 2003. Which was also about 17 years into being HIV positive. But the gut size is absolutely terrible. My waist size is about 33-34. It can vary at times. My shirt size is large. Weight is at 173 pounds. 5 Ft seven Inches...With an enormous gut. When people come up to me and say "When's it due" well.... Plenty of insensitive people out there for sure...

I know I will be keeping my eyes and ears open for anything coming up in the pipeline to help in getting this under control !

I have a similar problem but, not as bad as some. I'm at a 32" waist but, I've always been 30 and below... sometimes my stomach seems to just blow up for no reason... its very uncomfortable... I exercise, eat right but, I guess cutting carbs maybe the way to go... I am also seeing an endocrinologist next month. I recently paid over $6,000 to have facial injections of radiesse(sp) which has helped greatly... so I will see what this doctor suggest. Thanks for the information... I'll see how what she suggest doing.

I'm in the same boat, just got it in a slightly different fashion - 11 years taking Crixivan. I also have the hump and horsecollar neck.

I had heard about using Metformin for this, but thought it was still experimental. My doc and I discussed it. but he was reluctant to give it a go without more supporting data.

Have you had trouble with your lipids? I have been battling hyperlipidemia for a while now and my understanding is that is a real issues for those of us dealing with the various issues surrounding lipodystrophy.

MissP-you are right---I have been ON EVERYTHING and the virus has developed a large amount of resistance to any of the meds that were on the market before 2005 or so. So yes, context is DEFinitely needed here.

And actually, my doc did mention discontinuing my protease component of my regime, but the risk isn't really worth it at this point.

I have heard certainly about serostim and tesamorelin, but my doc wasn't very enthusiastic about them and the thought of adding more medications (to my current 8 or 9) is daunting.

I will keep looking for a trial since I am based in NYC and will have access to studies at some of the big hospitals here.

Mark---I don't show any increased lipids---just the body changes.

I will keep concentrating on cardio that works the upper body as well (like swimming). I am tall and always had a wide frame and broad shoulders--so getting down to a M sized polo shirt was excellent a few years before I started my current regime. I guess it gets down to priorities until there are more breakthroughs.

I feel for you - I have been reading about " Maitake" latin name: Grifola Frondosa - japanese call it a dancing mushroom It boosts immune system, potent liver protectant and contributes to increasing cd 4 cells and 2 other types of immue cells.

the bit that jumped out at me was the sulphated version of maitake extract REDUCES ORDINARY CELLS FROM CONVERTING TO FATTY CELLS IE LYPDISTROPHY....anything natural is worth trying

I have yet to find it in my neck of the woods - let me know good luck and keep doing what makes you feel fantastic....from someone who has been in your shoes cheers

earlier this year I developed a significant Kidney issue ( dx..acute renal failure ) it was reversed in about two weeks...with treatment but the kidney specialist was adamant about avoiding Metaformin in any form...I had it as a combination drug with Avandia..... she claimed that was a significant part of the cause in the renal failure. I don't know if that set of issues reflects your case but I certainly wont be using Metaformin....

Now, a month and a half ago, there was a meeting in London, the 10th International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV. At that meeting, two other treatments were talked about. One was a drug called IGF-1 [insulin-like growth factor 1], or IGF-1 combined to a binding protein.

It's what growth hormone causes to happen. But here, rather than using growth hormone, they use the IGF-1. And rather than this worsening toxicity, worsening blood sugar, it actually made it better. It also caused an anabolic effect: lean mass went up and the amount of fat in the trunk went down. But it didn't really lower it as much as had been seen before with growth hormone. But it was a little, tiny study, just to show that it could work.

Quote

Nelson Vergel: How about exercise?

Dr. Donald Kotler: Some people do that. Exercise will do it. The exercise that tends to do it is more resistance training exercise (i.e., lifting) than aerobics, surprisingly enough.

I find this to be very interesting. It's long been a known fact that resistance training stimulates hormone production including IGF-1. Also casein protein(a common supplement found in most protein drinks and naturally in milk) has been shown in mouse models to convert to IGF-1 in the liver. Start lifting those weights folks.

Too bad they can't yet do anything about lipohypotrophy yet but at least they got lipoatrophy under control with the newer drugs.

Yep, that is why I read through that doctor's comments and then posted that it was just depressing.

I am close to 24 years positive, have exercised religiously and regularly, lost weight, cut our fat, cut out sugars, cut out just about everything.

It didn't help.

It actually pisses me off when some doctor, regardless of how many people he has treated, spouts off with comments like, " Some people do that. Exercise will do it. The exercise that tends to do it is more resistance training exercise (i.e., lifting) than aerobics, surprisingly enough."

Yep, that is why I read through that doctor's comments and then posted that it was just depressing.

I am close to 24 years positive, have exercised religiously and regularly, lost weight, cut our fat, cut out sugars, cut out just about everything.

It didn't help.

It actually pisses me off when some doctor, regardless of how many people he has treated, spouts off with comments like, " Some people do that. Exercise will do it. The exercise that tends to do it is more resistance training exercise (i.e., lifting) than aerobics, surprisingly enough."

He is full of shit.

Yeah Mark, I hate that too, when I know I eat right, and when I know it's the years of taking the PI'smy diet is very good, I workout almost everyday, I have low HDL's, and when my ID Doc tells me that shit, I just want to LEAVE the room , cause I just know it's BULL SHIT, and a very POOR excuse, for her not to deal with the problem she knows little or nothing about I find it very interesting that when I bring up that subject, her response is "Oh That", look, you're 52 yr old man, you aren't EVER gonna look like you did when you were in your 30s" not matter how much you work-out are what you do"

« Last Edit: May 03, 2009, 12:21:50 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I share your experience - I am tall and otherwise lean and my tummy sticks out. I did get some attention at a leather fair day yesterday though.

Seriously - the PI's in your combo could be contributing to your tummy- do you have any other options? Also testosterone replacement therapy can help - as low testosterone is associated with abdominal visceral fat accumulation. You could ask your doc about injections or cream applied directly to the area.

all the best

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Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Yeah Mark, I hate that too, when I know I eat right, and when I know it's the years of taking the PI'smy diet is very good, I workout almost everyday, I have low HDL's, and when my ID Doc tells me that shit, I just want to LEAVE the room , cause I just know it's BULL SHIT, and a very POOR excuse, for her not to deal with the problem she knows little or nothing about I find it very interesting that when I bring up that subject, her response is "Oh That", look, you're 52 yr old man, you aren't EVER gonna look like you did when you were in your 30s" not matter how much you work-out are what you do"

At least I have a doctor who is sympathetic. He knows how hard I have tried to combat this. He also is frustrated because, short of removing all calories and fats from my diet, there doesn't seem to be a way to control the hyperlipidemia caused by the meds and, at least in part, by my age and my genes.

This is all coupled - the lipids, the lipohypertrophy, the lipoatropy,

At least I have a doctor who is sympathetic. He knows how hard I have tried to combat this. He also is frustrated because, short of removing all calories and fats from my diet, there doesn't seem to be a way to control the hyperlipidemia caused by the meds and, at least in part, by my age and my genes.

This is all coupled - the lipids, the lipohypertrophy, the lipoatropy,

HUGS,

Mark

Yeah, it still makes me mad tho.........Mark, I like your atavar-pic

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

It is nice to know that other people are as frustrated as I am. I have been talking to my doc about it for about 2 years and I just get stories about how other people are worse. The NP in my docs office actually told me that one poor guy tips forward because of it!!!!! He might need a cane to walk without falling forward!!

Now, that sucks but still it doesn't make it any better for me. I try to cut back on sugar, calories, and upping my exercise (although I do hate working out to be honest)....but nothing changes.

I am holding my stomach muscles in all the time, sometimes I just relax at home, put on a XXL tshirt and relax my stomach.

I might try asking about removing the protease inhibitors, but I bet my doc will be against it. I cam remember TIME magazine with Larry Kramer where his stomach made him look like GANDHI!!

Dennis-thanks for expressing your anger. I am PISSED about it too and wonder why MORE ISN'T BEING DONE??? I look on the internet and the studies are all from 2002 or BEFORE. Where is the more recent data??

Even chemotherapy for cancer has horrible effects on appearance, but it is TEMPORARY.

Sorry.....nice to vent once in awhile. I will just keep looking at my face in mirrors, and avoid letting my eyes run down my chest.

And if anyone needs to be reminded that this is probably the WORST place for a gay man to carry weight---go to Connexion.org ---it is a gay male social site and look at the "MOST VIEWED PROFILES"....they all have flat stomachs or ripped abs. Depressing....

I might try asking about removing the protease inhibitors, but I bet my doc will be against it. I cam remember TIME magazine with Larry Kramer where his stomach made him look like GANDHI!!

It's worth noting that Larry Kramer has never had the same degree of lipodystrophy as described in this thread. The famous picture from NEWSWEEK magazine (not TIME) was his distended stomach from liver bile prior to his liver transplant. Here's the pic:

My doc is ok with me removing the PI's from my current regime. He is much more comfortable with that over HGH and Avandia. He said that the dosages of HGH that are recommended in these trials are WAY higher than he thinks should be given and there are many troubling side effects.

Since I am still undetectable with 200+ CD4 count, he feels I am "stable" enough to try life without the PI's to reduce the belly fat.

I guess it is time to hit the gym and see how fast I can get rid of it!

Not saying that everyone will like his advice, but I felt it was important to update everyone.

My doc and I are having serious discussions about switching me off of PIs (Lexiva with a Novir boost, in my case), and putting me on Isentress. We haven't discussed the other meds. I presume I would stick with Combivir for the time being.

I really hate switching meds (I took Crixivan for 11 years because of my distaste for changing meds.)

I need to talk to my dr about this insentress. have been on prezista,norvir,and truvada since trials. I am undectable for first time but Ts never move off of 300. prezista is also the first med that does not have bad sides for me but I have had very bad lipo for over 10 years. Have had two liposuctions on neck,back and sides. These are just temporary fixes. Serostim is a scam, metafrom,glucophage are worthless. Done it all. the only thing that seems to have some effect for me,though not much, is a carb free diet. Problem is when you fall off the no carb diet you balloon to conditions worse than when you started. Have not been able to button a shirt around my neck in ten years. I know its the PIs but am afraid to stop the prezista because it has been so good to me.my other big problem is swollen parotids. the radiation treatment did not work and i consider it a scam. $10000! criminal.next person that tell me to go on a diet or exercise is gonna be attacked. I use weights,bikes,and walk everyday for over ten years.